The Fog of Celiac Disease

Celiac disease is tough. And I don’t just mean it’s tough to have…which it is.

But the diagnosis itself can be really tough because the symptoms of celiac disease for one person can be totally different than the symptoms for the next person. I have heard from countless celiacs since I started my blog. And their symptoms before diagnosis were all over the map: stomach aches, diarrhea, weight loss, bad skin, bone pain, etc.

But many of them mentioned one maddening symptom above all else.

The one that is hard to put your finger on. The one that is so difficult for people without celiac disease to understand. And the one that is even more challenging to explain.

This symptom is brain fog.

What is brain fog?

Brain fog is the inability to think clearly.

It’s feeling a bit “off” without being able to clarify exactly what you’re feeling.

It’s the loss of your mental sharpness.

It’s the forgetting of words or names that should come to you easily but somehow now escape you.

It’s getting sidetracked mid-sentence and then forgetting what you were saying.

And it’s ungodly frustrating. As a matter of fact, I put this next to sheer exhaustion as my two worse symptoms when I get glutened.

I try to stay sharp; both physically and mentally. I do the NY Times crossword puzzle every morning to start my day. (Well…”attempt” to do would be more accurate. Still cannot even touch Saturday’s puzzle. I mean seriously? A four letter word for “catalan article”??)

I find this gets my brain challenged bright and early and sets me on the right mental path for the rest of the day.

But when I’m in a brain fog state? Forget about it. Nothing helps.

If you want to read an interesting article from the medical community about the gluten-brain connection, here you go. Here’s a sentence that jumped out at me:

“Many adult celiacs who have not been diagnosed and are not following a strict gluten-free diet have some of the same symptoms as persons diagnosed with schizophrenia and other mental, psychological, or emotional disorders.”

Yowsa! It still just blows me away that something that can be of absolutely no harm to so many people (I’m referring to gluten) can be so debilitating to the 1% with celiac disease.

So the next time you’re talking to me and you get the feeling that I’m just not there, it’s nothing personal I assure you. It’s just the fog of celiac disease.

The Gluten Dude

Joseph

My celiac disease was diagnosed about 5 years ago and from time to time I developed brain fog without attributing it to celiac disease. I’m also hypothyroid and I have taken Synthroid routinely for many years. Recently I have had to take increasing doses of Synthroid because my FSH was getting higher. Looking back, the brain fog seems to have started when I increased the thyroid. Does anybody else relate the brain fog to high doses of Synthroid (thyroid hormone)?

Happy LaLa

I’ve been white flour free for 2 weeks now and mostly gluten free. I cannot BELIEVE how much less arthritis pain I have. My allergies have cleared up, brain fog is gone and the (easy) recipes I find online for a gluten free diet are endless, and on my ipod touch apps. Trust me, if I can go gluten free anyone can. I was a huge bread/pasta addict and something finally clicked. Now, I don’t crave it at all. I’m going to test out some recipes for gluten free breads, but for now I really enjoy Udi’s breads and bagels (gluten free). Make sure to defrost them in the micro. for 30 seconds, then toast them. Best of health to you all.

Tabitha

I had never heard about brain fog related to gluten. The term really hits it on the head for how I feel. I don’t have celiac, but am intolerant. I was tested 4 years ago and had the anti-bodies in my blood.

I felt much better taking gluten out of my diet even though it was really painful to do. Now it seems like I am feeling worse again and I am not sure why. I try to be gluten free in all things.

My allergies are flaring up again, the pain in my feet is back, intestines never seem right, swelling everywhere, very emotional, little bumps on my skin popping up all the time. It seems like I must be getting gluten in my system somehow, but can’t figure it out. Not sleeping well, really tired…Also, my weight has increased and I can’t seem to lose weight! The brain fog is awful. I feel so stupid.

Feeling very let down right now. I have survived many horrible things in my life (ovarian cancer, Adenomyosis , endometriosis, hyperemesis gravidarum) but am now not sure how/what to do to feel better. Everything is suffering- my family, work, me…I’m at a loss.

ALINA

Tabitha

Also- Has anyone ever noticed that you have a different reaction to different kinds of gluten?

I know I have accidentally eaten gluten a few times. A couple times at restaurants, I had asked specifically about everything, but before the meal was over, I was clammy, felt like I had the flu- dizzy, nauseated, gassy, etc… this is why I am afraid to eat out! Besides the common “rolling of the eyes” and “you are so annoying “looks I get.

Other times, the reactions have been much more minor.

Just wondering if different types of gluten cause different reactions.

As a well controlled coeliac i have developed cough related asthma and understand that these diseases are linked but i also suffer from time to time with terrible itchyness of my feet. This is so bad that it drives me to distraction. As yet i have not had anyone identify with me re these symptoms. Does anyone else suffer ? I also get a rash but i can get the itching alone. It is definatlyely NOT fungal and my GP does not sympathise with me at all. Am i alone ??

Anna

Gluten free for two years. Ate a slice of pizza and its been terrible! It didn’t hit me right away but rather couple days later. Lightheaded foggy have the runs feel unsteady and feel like I’ve been hit by a bus. Vertigo! I can’t wait till the end of the day to go straight into my bed. This is horrible. Learned my lesson for sure. Not worth it! Any advice????

Anna

Megan Clampitt

I can relate to this so much! I used to get in trouble for “not paying attention” or “being lazy” when I was really exhausted & couldn’t focus… to the point where I couldn’t see very clearly!

I’ve always been teased about bumping into walls & corners and being really clumsy & forgetful like leaving stuff in the wrong places, not being able to find something right in front of me or remember what somebody just said, etc.

but after I was diagnosed this summer & went 100% gfree I swear all of that has gotten unbelieveably better, and the people close to me who used to make fun of me have noticed too. Some people have mentioned that I have more energy, more focus, and that my “eyes look clearer & brighter.”

I definitely can tell a difference myself! My grades went up by 2 letter grades this summer! It was SO much easier to focus in class (that might have had to do with the fact that my stomach was killing me everyday!)

Ralpha Wharton

I was diagnosed with celiac disease almost 40 years ago. Method was a small intestine biopsy, and I have been on a gf diet all this time. Thankfully, there are many more food choices today.

I experience brain fog many days. I have RIPN, Radiation Induced Peripheral Neuropathy and lymphedema in my right arm and hand s/p breast cancer and lymph node removal in 1997.

The brain fog is very troublesome. And it is exhausting. I take levothyroid, anti-depressants and anti-anxiety meds daily. My psychiatrist started me on 60 mg cymbalta a month ago, and my energy level is improving greatly. But today is a brain fog day. Pooh!

How long does usually take for the brain fog to dissapear when going TOTALLY gluten free? I’ve been 8 weeks now strictly gluten free but I’m still suffering 24 brain fog. Sometimes it gets better, sometimes worse but this weird feeling in my whole head/mind stays with me all the time (short term memory loss, lack of concentration, lack of energy…) .
Thanks!

Ken

I’ve had these exact same issues and they’d gotten so bad the last five months, I thought I had the beginnings of Alzheimer’s. I started the 10 Day detox by dr hyman- designed to get you off of sugar which I eat boat loads of- and three days in I felt AMAZING. I also have watched no TV which helps tremendously. I watched some yesterday and felt the same lack of concentration that I was used to kick in once i was finished. today though, I had some gf almond meal by Red Mill today and literally three or four bites in my symptoms came back. (Discovered online they’re not so reputable). I was astonished. Dealing with it now. But before dinner, my mind was clear, I could think and be present and my focus was amazing. Bottom line: try no sugar, no gluten and no TV/iPod/iPhone/computer (minus simple work stuff) for ten days. I can’t tell you how good I felt by day four!!! Or try the 10 day detox. My god does it work. Hope this helps.

Margaret

I am a medical doctor who qualified 30 years ago. Back then we were taught that coeliac disease presented as diarrhoea and weight loss, failure to thrive in children but never the bloating, flatulence, joint pains, headaches,brain fog,psychiatric problems, poor energy etc I have suffered.Well 30 years later I had an endoscopy in the workup for a gastric sleeve operation because I never do any of the exercise I recommend to patients because I never feel well and the duodenum was atrophic.That was all the persuasion I needed to go on a gluten free diet. A few weeks later feeling a lot better, but stuck in a hotel room at a conference where the minibar was not glutenfree I decided it was time for a gluten challenge. After 40 years of constipation I had 5 days of diarrhoea, and now my bowels move more than regularly. No one ever understood when I said I had brain fog, a term I think I picked up from a patient, certainly not through my medical training.

Bren

The brain fog is the worst. Followed by the heartburn. I think what is so frustrating about the fog is if you have accidentally ingested gluten and you have celiac disease, then that means you have at least several days of fog ahead. I am a writer and the fog is a total inspiration killer.

Thank you for writing this. Additionally, I get brain fog when I eat any of the myriad of food intolerances I developed during my long road through illness. It is very frustrating. I’ve thought about making a list of do’s and dont’s for during brain fog, (like, don’t have blind faith in anyone) but how would I remember there’s even a list?! It’s like being the scarecrow – if I only had a brain. Then I’m panicky because I have no control of the ship. Afterwards, I’m left with trying to undo some of those decisions made while walking headless into situations. I’m very grateful to now have clear days in between!! For much of my long life, that was not there.

The article you cite here leaves me with no unanswered questions. That’s a plus Thank you again!

I was diagnosed with Celiac last year. Ever since September I have felt these EXACT ‘Brain Fog’ symptoms you describe. It has halved my quality of life. I never associated this with Celiac Disease until now! I’ve often cheated with my diet so I’m going to go 100% gluten free and see if the condition improves. I’ve been convinced this was the early warning sign of Schizophrenia and completely stopped smoking weed as a result of that. Thank you very much for the insightful article.

Bubba2629

Brain fog just flat ass sucks.on top of it I’ve lost major hearing and vision.hard to get out of bed.getting very depressed.have terrible nerve damage.cant remember the feeling of being a husband and a father,just feel like a damn patient.been going on for two years.tinnitus is so bad it’s driving me nuts,eyes blurry and out of focus. Been to the mayo clinic,Swedish clinic in Seattle, university of Kentucky and vanderbelt in Nashville.they think I have more than just celiac but that’s all they have ruled in.my newest neurogist said I don’t have a vestibular disorder.im in a 24/7 panic! I feel like I’m living in a dream. I used to love to hunt and fish and take my family with. Shit,now I have a hard time remembering the last time I ate or drank water. This disease is horrible and I pray to the lord Jesus that he will heal me.

Bubba2629

I’ll tell you this,if it wasn’t for the gluten dude and the efforts he puts to listening and truly understanding this shitty disease I don’t think I would be here. My hats off to you bud.you help people more than you probably know man!!! Thanks for being who you are man!!!!

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This is the best Celiac blog I have found. When I just want to scream from frustration, this is the place I come to find joy, peace, positive thinking, sarcasm, laughter, frustration and the will to keep moving forward and to know I have another day of healing behind me.

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Who is Gluten Dude??

Somebody who's been gluten-free since 2007 due to a diagnosis of Celiac disease, where the doc said my numbers were "off the charts". Someone who can steer you in the right direction when it comes to going gluten-free. And someone who will always give you the naked truth about going gluten free.

I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.